What do carers need? Don’t ask – you might be told

Is it just Australia that is unbelievably backward at coming to terms with people with disabilities and the family members who care for them?

Or do other countries assume you are not capable of identifying what can be done to improve the lives of family members with disabilities? As if your 24/7 experience doesn’t quite cut it in the search for evidence of what carers need?

The Australian Government and NGOs like to call us “carers” – most of us just refer to ourselves as mums, dads, grandparents, children etc.

Anyway, whatever they want to call us, the newish Australian Government has yet another Inquiry into carers underway. They were a bit shocked at the number of individual submissions they received (1600 + I’ve heard).

And now there is an online forum for those of us who want to take every opportunity to tell it like it is. It’s called Carers Virtual 2020.

Some of the comments on Carers 2020 are heart-rending in their eloquent description of what life is really like.

Other posts and comments have kept me giggling for a few days, although their analyses of what needs to happen are bitingly accurate.

And some aim to turn the whole disability/caring paradigm inside out and make it work by investing in people with disabilities and the families who support them.

You might be amazed to know that people caring for family members with disablity:

  • Want control over their lives
  • Are disgusted that they have to beg for equipment from charities
  • Know how to help their adult children live fulfilling lives
  • Need targeted supports relevant to life cycle changes
  • Expect investment in their children with disabilties while young to maximise their opportunity for full social and economic participation in adult life

In short, this inquiry – like every other carer inquiry – spells it out plain and simple that “carers” want the service providers, academic researchers, brokers, advocates, government agencies and everyone else making a living from Australia’s burgeoning “disability industry” to stop. Listen. Learn. And act based on what “carers” and the people they care for tell them is needed.

Too easy.  But I wonder if anything will change?

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How can I help my son get into trouble at school?

Yes you read that correctly.

Those of you who know us will wonder if there is anything else I can do to annoy the school further. Just asking them to obey the law and provide inclusion supports is proving too hard for too many.

The thing is, the cool boys get into trouble. That’s why they’re cool. Well, they are 13. So Mr S wants to be cool too. I guess he thinks he will be part of the gang that way. Makes sense to me.

So it’s my job – as helpful mama – to come up with some ideas for how he can get into enough trouble to get some cred, but not so much trouble he actually gets into trouble, if that makes sense.

Fortunately I’ve had plenty of experience getting into trouble with bureaucracies in the last 10 years. Something to do with not being able to be told what to do. Especially when my kid is treated differently, as if he is special or something.

So yesterday he wore jewellery to school. That worked quite well because he was told to remove it and of course couldn’t. The whole class noticed the fruitless struggle to lift both arms up to try to undo the neck chain. So it stayed dangling around his neck.

What bad thing can he do next week?

It can’t be obvious stuff like driving the wheelchair too fast because that really gets him into trouble. Although he has my approval for doing that when teachers are not looking and there is plenty of space.

It’s hard enough trying to live within (or gently bend) rules and not get into trouble, especially when the world is not inclusive.

But I’m amazed how much harder it is to try to get into trouble, albeit carefully and with credibility.

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Speak up for people-first language

It’s coming up to Cerebral Palsy Awareness week in Australia.

Time to grab a brief media opportunity to educate people about what CP is and means to people who have it.

Most families of kids with CP look to government and privately funded CP organisations to spearhead public education campaigns.

We want these organisations to publicly reflect what we spend a big chunk of our lives fighting for. Which is for the world to treat our kids as kids, not a medical diagnosis or disability … not different from every other kid.

So how can a positive education campaign end up reducing people with CP to a diagnosis?

With one lazy headline:

CP Champions

Yep, diagnosis first, person last. What happened to people-first language? Like “Champions with CP”?

For a clear explanation of the power of language to value or devalue people, check out Kathy Snow’s words of wisdom.

Words count. Information is power. How can we families convince the world to accept – let alone welcome – diversity, when our kids and friends with CP are presented not as people but as a medical diagnosis?

This is not about political correctness. This is about inclusion, treating everyone with respect. As people first, not just diagnoses.

There were only good intentions behind this CP awareness campaign about an interesting bunch of talented, determined people. So how could a CP service provider and educator get this crucial first impression so wrong?

Sorry TSCNSW. We want to educate the world, not reinforce stereotypes. Please lead by example.

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What’s wrong with him?

If I had a dollar for every time we’ve heard that question from a complete stranger …

Unfortunately it’s so often the first words – after some serious staring – when people see a child in a wheelchair or using a walking frame.

I’m pleased to say many people – like rollercoasterparenting – give the “correct” response:

“Nothing”

Some of us with older kids have grown rather tired of this question, which we have heard maybe 1000 times.

Very occasionally (well no more than twice a week) we may become a little too loquacious in our response to an impolite, curious stranger:

“Why – is there something wrong with you that you want to tell me about?”

The stranger looks perplexed, mildly shocked.

“You don’t want to tell me about any of your medical conditions?”

Looking very shocked now, vigorous head shaking, sometimes accompanied by the slow dawn of realisation that they have asked a really intrusive, rude question of an adult they don’t know about a child who is sitting right in front of them.

It’s just words, I know, but words are important.

For the record – there’s nothing wrong with him. In fact, I think he’s perfect. He’s a regular annoying, noisy teenage boy with robust good health and poor taste in jokes who uses a wheelchair to get around because that’s easier and faster than walking with the help of a walking frame.

But I don’t discuss my family’s medical conditions in public with complete strangers. Do you?

So the next time you are curious, that’s fine, but think before you speak. And if you ask me about my kid’s medical condition, I’m likely to ask you about yours. In detail. In public.

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Hmmm

By Terrible Palsy.  Cross posted at terriblepalsy.

In our local paper there is a column called “Chatroom”.  It seems its purpose is for people to send SMS messages and they get published, kinda like letters to the editor without the correct spelling.

I don’t often read the column because I get a bit shocked as to the aggression and rudeness of the messages.  Lately, they have been all type of abusive messages about disabled and parents with prams car spaces.  Like this:-

All the sooking about the pram spaces.  What about the disabled spaces.  How many do they need.  A lot more mums go shopping each day than disabled people.”

and

To P..d off mum.  You would not have to struggle with babies etc etc if you stayed where you belong.  Chained to the kitchen sink.  So instead of moaning about parking as you flutter from dress shop to cafe to shoe shop, do something productive and iron your hubby’s socks and hankies.”

Makes me feel so safe and secure about the world Moo is growing up in.  Is it just me or are people getting less and less empathetic?

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How many sticks to build a footpath?

Australia ratified the United Nations Convention on the Rights of Persons with Disabilities on 17 July 2008, one of the first western nations to ratify the convention.

Good. Now comes the hard part – getting various levels of Australian governments, government agencies and people in general to make inclusion policy reality. Time for deeds not words guys. We’d like to receive some inclusion action at least as good as the NSW Government offered to pilgrims with disabilities who visited Sydney during World Youth Day (week).

Maybe the Convention will be a bit of a legal stick. Inclusion is not a noticeable feature of the affluent area of Sydney that I live in; clearly the “carrot” of simply valuing diversity has had no effect. There is a little talk but not much action to enable inclusion for everyone, regardless of ability.

Indeed, my local council cannot afford to provide footpaths/sidewalks to enact their policy of “accessing the community”, despite collecting rate payments from homeowners in an area where most residential properties sell between AUD $800,000 and AUD $3 million.

Council has invited me to spend AUD $20,000 funding the construction of a public footpath on our street, whose development approval they will expedite. Isn’t that big of them? I guess I’ll own the footpath then. As Queen of the Footpath I may let the power go to my head and refuse permission for some people to “access” my footpath.

I had asked the local council to provide a footpath and a safe road crossing so my 13 year-old son could take himself independently between home and high school. This is a distance of under 1 kilometre, which currently we drive in our van as I won’t let him drive his powerchair on a busy road, mean mother that I am. Although, there is no accessible parking near his school anyway.

I can’t write to Council rejecting their offer of privately funding a public footpath until the steam has stopped coming out of my ears and the expletives stop whirling around in my head. In the meantime, I will send them this:

NOT ACCESSIBLE

NOT ACCEPTABLE

And a link to the UN Convention website. Article 9 is a good starting point – here’s an except:

On the fundamental issue of accessibility (Article 9), the Convention requires countries to identify and eliminate obstacles and barriers and ensure that persons with disabilities can access their environment, transportation, public facilities and services, and information and communications technologies.”

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Stop bugging me!

By Jodie

A quick, hassle free trip to the supermarket is usually impossible when you have children.  One of my children has a physical disability and is unable to walk.  Getting a park in a accessible parking spot is supposed to make it a little easier for me.  It also has the potential to completely ruin my shopping experience, as I found yesterday, yet again.

 

As I pulled into my parking space, I noticed the woman in the car next to me staring.  Instinctively, I checked if she had a parking permit.  She had one.  As I got out of my car she wound her window down and abruptly said “You do realise that you are in a disabled parking spot, don’t you?”.  I was instantly annoyed.  I snapped back, “Yes.  I do have a permit.  I have a child with a disability in the car.”

 

I was so mad I was shaking.  Why did I have to explain myself to her?  This woman still didn’t look satisfied with my response and said “Oh, alright”, then drove off.

 

What made me angrier was that I see this woman often.  The only reason that she didn’t recognise me, was that she is always too busy staring at my child.

 

This is not the first time that I have been questioned for parking in a accessible parking space.  I can understand that these people are driven by frustration.  I am sometimes inconvenienced by people without permits parking in these parking spaces too.  I do understand their intentions.  However, they should check first to see if I hold a permit.    Then, once they see that I do have one they should leave it at that.

 

I once had an elderley gentleman ask me if I had borrowed the car.  I did not have the energy to explain so I just said “No, it’s mine.”  I then smiled at him, got into my car and drove off.

 

I also have, on two separate occasions, had elderley women question my reason for holding the permit after I told them that I had one.  They didn’t see me struggle as I transferred my child into the car.  They always challenge me before they have all of the facts.

 

My explanation for this behaviour is ignorance.  They only see their own struggles.  My child’s disability is not what gets me down, it is attitudes and behaviours like these.

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